Hoping for Daylight

"Even the darkest night will end and the sun will rise."          Victor Hugo, Les Miserables

I'm sorry I didn't get back sooner to tell you all how things went last week. I know that while many of you get information other ways, there are some for whom this blog is the main source of information about our family, and I try to keep up for that reason.

Last Monday, Hope was admitted into a facility a few hours from home that has both acute and residential treatment programs. As I said in my last post, she is not stable enough to be admitted directly to a residential program, but we knew that she'd meet criteria for immediate admission into the acute facility. I'll explain what the team in the acute unit is currently doing for her, and then we'll talk about what happens next. (Spoiler alert: We don't actually know at this point.)

Right now, Hope is in a secure, acute facility. That's the highest level of psychiatric hospitalization, and is reserved for individuals who are currently too unstable to be anywhere else. Because of her active psychosis, and daily homicidal ideation, Hope always meets criteria to be at this level. Several people have asked why -- if she is like this all the time -- hospitalization is so pressing now, and is being pursued harder than in the past, when we've sometimes gone months between hospitalizations. The answer is that we thought she was more stable then. We've only known since early April that none of the meds have worked at all, and that she was being dishonest about that. Since we discovered just how on-the-edge she's really living, there has been huge pressure to either find a way to stabilize her, or keep her somewhere more secure for now. Her outpatient providers just don't feel like outpatient is enough for her right now.

The good news is that the doctor who is currently treating her is doing what neither the doctor in the last hospital nor her outpatient psychiatrist would do. He is increasing her Clozapine. If you've been with us long enough to know about this med, you know that it's our best chance. If multiple other antipsychotics fail to help, the best thing you can do is try this med; a percentage of people who have not responded to anything else will respond to this. We started Clozapine seven months ago, have increased several times, and it has not affected Hope's psychosis so far. When two doctors told us that they personally wouldn't go any higher, we were crushed. Of course we don't want to just throw high doses of intense meds at our child! But what else are we to do? We know that if this doesn't work, the chances that anything else will are incredibly low. (This is because the meds in this class are all similar enough that if multiple ones have failed, there is very, very little chance that any of the others would work.) Clozapine is the best option, period. We also know that the official info on this med says that we can go a fair amount higher, so we're not asking for anything outrageous or unsafe. The hesitation by some doctors is her age. However, she is not yet at the max adolescent dose, so we're not trying to get them to do anything that isn't supported by the official info on this med. All we wanted was for someone to be willing to push on up toward the higher end of the range and see if she might respond. Is there a chance that she's in the 10 - 20% of people who don't respond to any meds, or respond only minimally? Yes. That's not only possible, but looking increasingly likely. Are we willing to say that at this point? Absolutely not! Meds are the one and only way to control psychosis. You can't talk someone out of a psychotic state any more than you could talk them out of diabetes; their bodies are malfunctioning in a way that only medication can help. Meds won't necessarily affect symptoms other than psychosis, and most people with schizophrenia are still quite impaired even if they're psychosis free, but controlling psychosis would give our girl a much better quality of life, and would greatly reduce her need for hospitalization. If we hit the point where we can't go any higher on her Clozapine, we'll essentially be giving up on meds. We won't say that, of course. We'll try everything on the market, on the crazy chance that against all odds, one of them happens to work for her. But we know that this is our best hope. That's why it has been such a big deal, and why we're so thankful that the doctor who is currently treating her has been willing to increase it. The bad news in all of this is that we've already done two increases, and she's still showing no effect. The good news is that we're still trying, and still hopeful. 

We don't know how long Hope will be in this acute unit. We're doing all we can to stabilize her. Despite the fact that we've never actually managed that before, it is of course the point of acute hospitalization. We hope that we'll hit the point where the med she's taking is at the right dose for her, and her psychosis breaks for the first time in almost two years. (Now, the fact that she's lied about it before makes it tricky, and I don't know how we'll decide whether or not to believe her if she says it's working. We'll cross that bridge when we get there, though, because right now she's being honest with us about the fact that it's not working.) It is also possible that we won't reach that point, and that we eventually get to where the doctors have tried everything they know to do with her meds, and they simply can't keep her forever. Where do we go from there?

Whether or not Hope has achieved more stability, she'll need to move on from the acute unit within at least the next couple of weeks. The average length of stay there is six to fifteen days, and she's already been there for six. I don't know what will happen, but there are basically three options for where a person could go after discharge:
- Home. This would be an option if she's stable enough to be safe at home with just outpatient treatment. Conversely, we could end up bringing her home even if she's still unstable, but acute can't justify having her there any longer, and a residential program won't accept her. It's so messed up that a person could be denied admission to a residential program because they're too sick, but end up at home by default, which is even lower security. 
- Residential treatment. If she has responded to meds, this type of program could help her learn to live as normally as possible with her remaining symptoms. Even if meds work, they'll only knock out the psychosis, and a person still needs to learn how to function as well as they can with a slew of other difficulties. The highly structured nature and frequent therapy of a residential program could be beneficial. Even if meds don't work, her therapist believes that residential treatment would still be beneficial. However, it would depend on the program's willingness to take her despite her ongoing symptoms, and whether or not they think they could do anything to help her.
- State hospital. This is the one thing we almost never discuss, and we would not go into it quietly. I'm throwing it out here as one of the things that could, in theory, happen to a person upon discharge from an acute facility, but I'm not ready to talk about it for us personally. I have mentioned here, on occasion, that the type of place that could serve a very ill person are the so-called "institutions" that barely exist anymore. Several mental health professionals who have treated Hope have brought up this option, at least in a "have you ever thought about this?" way. Basically, state hospitals are longer term but still high security, which is (in theory) how you bridge that tricky gap between "acute isn't long enough" and "residential isn't secure enough." Just this week, Hope's current hospital therapist asked if we'd ever talked about that option. The answer is that we are not looking at that option. State hospitals serve a purpose. I'm glad that there are still some in operation. Some people are either too dangerous to be in the community without risking harm to the general public, or too vulnerable to be in the community without being easy targets to be victimized in any number of ways. These places are not the horrible asylums that we think of when we hear state hospital, and they're not places where you just park someone for life and drive away. (They are never to be considered someone's residence, and they are always supposed to be actively working toward moving the person into the least restrictive setting.) Anyway, back to our specific situation. Hope is a minor who has parents who supervise her at all times. We believe this makes her neither dangerous enough to need to be kept out of the community or vulnerable enough to need to be sheltered from the community. 

The short version, not that I ever manage the short version of anything, is that we don't know what happens next. We know that we want Hope to be at home with us. We know that professionals whose opinions we value and trust have told us that she needs something more than that right now. We know that we are willing to do anything if we have good reason to believe that it will change her life for the better in the long run. As is so often the case in our lives, right now we can only take one small step at a time, and see how things play out.

I like to try to give specific prayer requests, and suggestions for how to help us. I hope you all understand that I'm not asking for or expecting anything from anyone. I like to include this information for those who ask, and also because I think it could potentially be helpful to apply to other situations, should you happen to know anyone else whose family shares any of our struggles. 

Prayer requests:
- Peace and comfort for all of us.
- Guidance - That we would know what decisions to make, and that her treatment team would know how to best help her.
- Healing. Whether it be through med response or the healing that we do believe is possible, please pray for Hope to be healed.
- Patience, as we struggle with being apart, with not knowing what's going to happen, with our interactions with each other.
- Please continue to pray for our baby boy, as his anxiety continues to be at a high level. We try to keep things as calm and normal as possible for him, but he's ten years old, and he fully knows and understands everything that's happening in our life. That has to be difficult, and during some periods of time, he has struggled with anxiety. Please pray for his peace.

How you can help:
- Local folks: Help me keep my sweet boy busy while his sister is away. He used to occasionally comment that he felt bad for a friend of his who is an only child. That sounded like the loneliest thing to him. Since Hope became sick, things have changed a lot, and they don't interact as much as they used to. He still loves her like crazy, though, and I know it's hard when she's away. All of our regular school-year activities have stopped for the summer, our days are less full (at least with fun stuff) and I don't want him to feel sad or lonely. If you have kids who are friends with mine, help me keep play dates and such on his calendar. Just also try to keep in mind that I'm pretty busy sometimes, too, and that I'm not trying to avoid you if it takes a few tries to figure out a time we can get together.
- Tell me what's going on with you. I love that people ask about Hope, but I also want to hear about you! I don't want to talk all the time. I don't want to feel like my conversations and friendships are one-sided. I'm uncomfortable with feeling like I'm taking more than I'm giving in any situation. Tell me what's up with you -- the good things, the bad things, the mundane things. Please don't think that just because there's big stuff in my life that I don't care about yours!
- Send cards. Our girl's 14th birthday is in eight days. We can't say for sure (goodness knows our life is nothing if not unpredictable!) but there's a good chance she won't be home. There are very few things she's allowed to have in the hospital, but she can have cards, letters, and pictures. I thought it would be really cool to be able to shower her with cards for her birthday, since there is so little else I can do. This is a time-sensitive request, though. They probably need to be in the mail within the next couple of days, since her birthday is Monday, and we'd need to have them by Saturday. You don't have to say anything profound (in fact, she appreciates humor more than mushiness anyway), just the gesture would be appreciated. If you're interested in sending a birthday card, message one of us for our address.

I guess that's it for now. I'll try to be back again soon. Hopefully, we'll have things more settled in the near future, and know where we're headed from here. I hope you're all well, and enjoying the start of summer!

Curveballs

"This is my family. I found it, all on my own. It's little, and broken, but still good. Yeah, still good."          Lilo & Stitch


Well, as I said in my last post, our life moves very fast sometimes. Our family definitely has more than our fair share of chaos, but we ride it out together, and we're thankful for those of you who are willingly along for the ride.

We finally got word that all paperwork had been received, and that they were ready to schedule Hope's admission. I packed up all of the personal effects on the provided list, gathered all of the various documents and things we would need at admission, lined up dog sitters, and booked a hotel for a couple of nights so we wouldn't have to drive there or back on admission day. On Thursday, we made the five hour drive, checked into the hotel, let her choose a restaurant for dinner, spent some time in the hotel pool, and tried to come to terms with the fact that we were just hours from starting our longest (both time and distance) separation ever. On Friday morning, full of nerves and dread, we went to the facility.

On arrival, we met with the admissions director, and she explained the process. First, she said, Hope would need to be evaluated by a psychiatrist. As I mentioned in my last post, they can't ask our insurance company for approval until they've conducted their own evaluation, because they have to present that assessment to them. We spent over an hour in what should've been a fairly brief psych evaluation, and knew almost immediately that it wasn't going well. The doctor pretty much told us so, but took it to her boss for discussion anyway. Apparently, he agreed.

In the end, we were told that they couldn't admit her. The person who received all of our records, accepted her, and scheduled her admission was the admissions director. She knew that Hope met multiple points of their exclusionary criteria, but still thought they could help her. A psychiatrist had never reviewed her files, and wouldn't have let us get as far as we did. They told us the same thing everyone tells us; she needs treatment, but they can't help her there. They said she was very close to the point where they would've had to call someone to transport her to an emergency facility, but they didn't want to do that with us so far from home, and accepted our promises that we would do that if we thought we needed to. Because we have done that on eight different occasions, they trusted that we would, and that we could determine where that line is. The psychiatrist told us that we should continue to pursue getting her into some type of long-term treatment, but admitted that she didn't know of any programs that would be both long term and secure enough. (As I said in my last update, acute programs are secure, but short term. Residential programs are long term but less secure.) We discussed the fact that "institutional" hospitals barely exist anymore. She said that she doesn't actually know of any, but that there have to still be some somewhere, and that we should keep looking for something like that. *sigh* Thanks for the help, doc.

As far as their program, they gave us several reasons they couldn't accept her:
- They couldn't risk the safety of their other kids by having her there. They have plenty of kids who act out aggressively and have a history of fighting, but that's different than a person who looks you in the eye and calmly states that she's entertained homicidal thoughts as recently as that very day (every day, in fact), and that the reason she wants to kill someone is just because it sounds like fun. In a place with extremely high security, you know that someone couldn't really hurt someone else even if they tried, but that brings us to the next point...
-  Their facility is not secure enough for someone like her. They think she needs to be somewhere that's "hardware secure," and while these kids are supervised, the program is very outdoorsy, and therefore not secure enough. They live in cabins that are more like home or summer camp than a psych facility. The doctor mentioned that kids at this facility could potentially get their hands on things that you can't in a locked hospital ward, like kitchen tools or utensils, scissors, or things like rocks and sticks. 
- Even if security wasn't an issue, they didn't think they could help her. They said while their program does treat mental illness, they mostly have kids with behavioral problems and/or milder illnesses. (Because, well, pretty much all illnesses you see in young people are milder than hers.) They give kids some counseling, some meds if necessary, some structure and responsibility, and help them learn respect, better coping skills, help them heal from trauma or fractured families, help them work through negative self-images, etc. You know, things that troubled teenagers might face. They are not prepared to handle someone who is, in their words, as "chronically mentally ill" as our child is. She is a whole different level of patient, and they couldn't see how they might be able to do anything that would affect her life in the few months they might have her. This is the problem we've found everywhere she's ever been treated. They are used to dealing with adolescent problems, and that's not what she has. The people who would know what to do with schizophrenia, especially med-resistant schizophrenia with especially persistent psychosis, work in adult hospitals. She is years from being able to be treated in that type of setting.

It was an incredibly frustrating experience. We did everything right. We were totally up front about her illness, so they'd know exactly what they were getting, and could determine ahead of time whether or not they might be able to help her. We sent a huge file full of things like intake and discharge summaries from all of her hospitalizations and letters from her therapist and psychiatrist. Right there, in black and white, was as clear a picture as we could paint for them. Yet somehow, they still seemed surprised by the severity of her illness. Honestly, it was a huge blunder on their part. The admissions director was apologetic, and I was sad for her, because she looked like she felt awful. She took full responsibility for making us get to that point, only to be turned away. I think she really wanted to be able to help this child that no one else can/will help, and I guess she really thought that they could. I wasn't angry at anyone, but I felt pretty crushed to have been turned away.

In the end, this was a resource-sucking dead end. We spent time on this lead. The process took weeks, during which we stopped looking for other options, because they had already accepted her, and we were just trying to get through the long process. I gave so much time to phone calls, emails, faxes, forms, gathering everything they needed, driving to facilities to sign release forms, because it would be faster than waiting for mail and they wouldn't accept fax. We also spent two days away from home, including ten hours of drive time. We spent money on this lead. I purchased things she ended up not needing, because the nature of their program meant that their packing list was very specific. We spent on gas for a road trip, two nights at a hotel, and two days of meals out. We spent on getting them everything they wanted in order to consider her. (For example, we had to pay for things like non-insurance-billable phone calls with her providers, letters that took them time to write, fees for copying records because that was the fastest way for us to get them.) We spent emotional energy on this lead. That resource is just so scarce right now.

I guess I've gone on long enough about the failed hospitalization, though. The burning question is "what happens now?" We drove away from that hospital without a clue. We'd been told that she needed residential treatment, but this place was literally the only residential facility we'd been able to find that would even consider her. Do we keep looking, and if so, where? Do we consider going back into acute hospitalization, and if so, what is that going to accomplish? The admissions director at the failed hospital, along with the gentleman who works for their parent company and had put us in touch with them in the first place, said they'd try to help us find other options. This man's advice, now that we'd been turned away from our only residential hope, was to look specifically at facilities that had both acute and residential programs. An acute hospitalization isn't enough to do anything, and residential programs are all going to tell us that she has to be stabilized before they'll take her. But what about getting her into a place where the acute folks could try to stabilize her, and even if they couldn't, they'd be familiar enough with her case to vouch for her with the residential side of their own facility? Rather than just discharging her with a recommendation for residential treatment, maybe they could help get her into residential. The man I referenced above sent her file to another hospital that's owned by the same company that just rejected us, and this hospital has both types of treatment on the same campus, which we think increases our chances of success. However, it's about 1,150 miles from here, which means either 18 hours by car, or burdensome airfare and car rental. Even if they accept us, which they haven't, that's not a great option. If they were specialists there who actually had significant experience with childhood schizophrenia, we'd do it in a heartbeat. It doesn't appear that they'd be any better at it than any other random psych hospital, though. This hospital was really only recommended because it happens to be owned by the same company, and that's not enough reason for us to pursue something that far away.

What now then? I spoke to Hope's therapist on Friday, and we discussed the idea of looking at facilities with both types of treatment programs. She agreed that that would be our best bet right now. Hope meets all criteria for hospitalization. (She always does, actually. We keep her at home as much as we can, but at any moment, we could take her to any hospital, and they'd keep her.) Any acute facility should be easily willing to admit her, we just haven't wanted to do that again yet. However, if we're looking for a place that could admit her into an acute unit, and then perhaps move her toward a residential program in the same hospital, it's worth doing. At this point, we have no other prospects for getting her into residential treatment. On Friday afternoon, immediately following our rejection from the other program and a quick phone call with her therapist, I called the place that the therapist and I agreed should be our next move. They have licensed clinicians who take calls and help families decide whether treatment there would be appropriate. I spoke to a very nice woman, told her exactly what our situation was, what had been recommended, and about the situation we had just been through. She said that, given Hope's current situation, she would probably not be a good candidate for their residential program, but certainly would be for acute treatment. I was open about the fact that I called them specifically because I hoped that they could bridge the two better than just taking her to any random acute facility, and asked if she thought that was a possibility, and she agreed that it sounded like a good move for us. Does that mean that any of it will work like we hope? Absolutely not. It only means that one person in that hospital understands our situation and thinks they might be able to help us. What else is there to do at this point, though?

Tomorrow, Hope and I will head to this new hospital for a scheduled evaluation. We have packed everything she would need if she were to be admitted, because there is a very good chance that she will be. If they keep her, she'll be a little under three hours from us. We won't be able to visit her daily, like we've done when she's been in hospitals close to home. We won't stay in a hotel near her, like we've done when she's been in an acute hospital a few hours away. Our finances have simply taken too much of a beating to allow that. We have been mentally preparing for a residential stay, though. We knew we would only be allowed to visit so often, and that the distance between us would only allow us to visit so often. Even though this will be an acute stay, we'll just have to treat it the same.  Once she transitions to residential, if she is able to transition to residential, we'll figure out how that all looks. 

It's a difficult situation, and I'm really sad about it this time. I'm never happy about it, of course, but this feels really stressful. Maybe it's just the quick change in plans. There will only be three days between the expected admission to one hospital, and the likely admission to a different one. This plan feels a lot less settled than that one, because it's not the last stop -- it's designed to be a shorter stay, and we'll be working to manage this step while figuring out the next step. I had processed her being in a residential facility, and come to some kind of peace with not being able to see her as often, because I knew that she'd be doing outdoorsy things and would be generally happier than if she were locked up somewhere. Now we're looking at her being in a locked facility, in an acute program that would allow daily visits, and we (the parents who are always, always there, looking around at the kids without visitors and wondering how a parent could just not be there) will only be doing phone calls, because our year has just been too expensive to be able to pick up and stay near her this time. I feel guilty that she'll be in a different setting than she'd expected, and I feel guilty that I won't be there as much as I'd want. I feel unsettled in the fact that I know less about this hospital. We researched it some, before we found the other one, but didn't spend as much time on it. I've already asked about a tour, and they said they'd be happy to let me tour the facility. Still, I just feel so much more conflicted about this move than the one we thought we were making. I know I can't always make decisions on how I feel, though. I'm never going to feel good about putting my child in a psychiatric facility. I hope that seeing the facility tomorrow will help me feel a little better, but I have a feeling that if she's admitted, I'll be a wreck when I have to drive home and leave her there. 

I wish this update was more settled, or more coherent. I feel like I'm probably rambling, and saying way too many words but still not making sense. I really wanted to post an update today, because I know that people love our girl, and want to know what's going on with her. I feel so scattered and broken, though, and simultaneously empty and full-to-bursting with too many emotions. Forgive me for the mess of a post. 

I will do my best to update again very soon, and hopefully be able to give you all a better idea of what this round of treatment will look like. If you're a praying person, we would appreciate prayers as we navigate all of this. <3

In Limbo

"When enemies are at your door, I'll carry you away from war, if you need help, if you need help. Your hope dangling by a string, I'll share in your suffering, to make you well, to make you well."          Gone, Philip Phillips

Another month has passed with no change in symptoms, and little change in circumstances. I'll try to catch you all up on what has happened since I last updated. I'll warn you that this is going to be long. I don't update all that often, and our life moves very quickly sometimes. I figure it's better to tell more, though, and you can read as much as you like. I'm breaking this post down into sections, to make it a bit easier to follow.

Since my last update:

Baby girl spent two weeks in the hospital. Three changes were made to her meds, and she showed no response at all. The only thing that was different this time is that she stuck to her commitment to be honest with us about symptoms, and didn't just say that she was feeling better to try to get out. Every day, she reported that she felt exactly the same as the day before. It was disheartening to see that she wasn't responding to med changes, but at least we got honesty from her this time.

Her discharge was pretty abrupt, and illustrates how difficult it is to get any help in our current mental health system. The psychiatrist assigned to her in the hospital was one who had treated her before, and we were comfortable with him and confident in his skills. He was not anywhere near ready to talk about her release yet, as she still had the exact same symptoms that brought her there. He was off for two days on the weekend, and she was seen by another doctor who also didn't talk about discharging anytime soon. Then, on Monday morning, her regular doctor had a personal issue of some kind and wouldn't be able to come in for a few days. She was assigned to another doctor was called in to cover, and this doctor decided on the spot (after reading her chart, but before ever meeting her!) that she'd be discharged the next day. He reasoned that while she was still hallucinating, she was no longer as dangerous. She came in with command hallucinations; specifically, her voice was telling her to kill people. Once in the hospital, it stopped saying that very often, and mostly told her to do things like lie about the voice, say the meds are working, get them out of there, etc. When asked about it, she said that it always says those things when she's hospitalized, and when she gets out, it resumes its regular stuff. However, this doctor said that because she was having few homicidal command hallucinations, he couldn't justify keeping her there. Despite the fact that we knew she was no better, and that her symptoms would return to their usual state as soon as she was on the outside, she was discharged. Her regular psychiatrist didn't agree with that move, and told us that if we had any hesitation about taking her home, we could just head straight to any ER. She still met all criteria for immediate crisis hospitalization, and would've been admitted. We felt okay just taking her home and keeping her well-supervised while we worked out the next steps, though.

What do we do now?
What we did get from the hospital is a strong recommendation for residential treatment. We knew it was coming. Her outpatient psychiatrist and therapist had both told us that we had arrived at that place, and we weren't surprised for the hospital psychiatrists to say the same thing. We have been unable to stabilize her for almost two years and she can't just continue this way. We have to do something, and there aren't really any other options. Her eight hospitalizations over the last eighteen months have all been in acute facilities, and they've done nothing for her. We were told to pursue treatment at a residential facility, which is a place designed for stays of months rather than days or weeks. It's heartbreaking for us to have to think about her being away for longer, but everyone who treats her agrees that outpatient is not enough for her right now, and that we must do something else.

The process:
Pursuing residential treatment has been a stressful and exhausting experience, and we're still not there. First of all, we were told that private insurance rarely approves it. We dove in anyway, with no choice but to try. We quickly discovered that, for one reason or another, none of the few places in our immediate area would be possible for us, and that we'd have to expand our search and accept the possibility of her being farther away from home. I made calls to many places, talked to many people, and found dead end after dead end. However, there were a few people along the way who were able to tell me that while they couldn't help, they could give me contact info for another person or another facility. I've been so blessed by the people who have gone out of their way to try to help us, when it was really only their job to say that we weren't a right fit for them, and could've just moved on from there. There have been more than a few people along our way who have made phone calls, sent emails, done whatever networking they could do to try to help this unique kid.

What we discovered was that even if a facility looked good enough for us to consider and was in-network with our insurance, we still couldn't get them to consider her. We learned that on top of criteria that patients must meet for admission, places also have lists of exclusionary criteria. In other words, if you have anything on that list, they turn you away. Once we knew to ask about that right away, we discovered that there wasn't a single place we could find that didn't exclude active psychosis. See, residential facilities are designed for longer stays, but are actually a step down in security level. The proper procedure is to use an acute facility to stabilize the person, and then, if necessary, move on to a residential facility to provide the additional support or resources they need before going back to outpatient. An acute facility should be able to treat and stop psychosis, and after that point, you can use residential treatment. What happens, then, when a person has psychosis that won't respond to anything, has been through countless acute hospitalizations, and still has psychosis that hasn't changed in nearly two years? The acute facilities can't keep a person for very long; they're not designed for that. Residential facilities can help with many things, but something as serious as current psychosis isn't their thing. The type of places that people would've previously called institutions, that were real hospitals designed for long stays, are almost nonexistent now, as it is believed that most people do best in community-based treatment. There simply is no place for a person like Hope.

A possibility:
After what felt like an endless series of doors slammed in our faces, we finally found a possibility. Through a chain of networking contacts, we found a person who was high up enough in an organization that he was able to get someone to agree to take a look at Hope's case. She meets exclusionary criteria for this facility, but the clinical director could choose to make an exception, so we hung our hopes on that. We put together a huge file of clinical data; her therapist wrote a long, exhaustive letter, and had a phone consultation to make our case for why she needs this; we went through channels higher than the ones that would've normally stopped us at the initial admissions screening. To our great relief, they agreed to take her... conditionally, though. That's one huge hurdle that has been cleared, but there are more.

Where are we now?
Unfortunately, it's not a quick or easy process. There are multiple steps of paperwork and red tape to get through. Right now, we're paused at the step where they have to get permission from both states for her to get treatment out of state. This is something that not every state requires, but this facility is one that does, so our longest step is waiting for two state agencies to approve it. After we get clearance from both states, we'll be getting pretty close. Well, except that one of the largest hurdles yet is still to come. We still have to get insurance approval. Now, I thought going into this that the insurance step would come early. That made sense in my inexperienced mind. However, the only thing they do in the early steps is confirm that your insurance plan does have coverage for this type of hospitalization. Actually getting approval comes right at the end, because once they get pre-certification, they have to admit within 24 hours. That makes sense, because how can you be certain that a patient still needs it if you approved them weeks ago? So, while I understand why it has to happen that way, it's stressful. We have gone through weeks of trying to find placement, jumping through hoops in the placement process, etc., and we won't know until the very end if our insurance company will allow it. She is such a unique case, with such a rare and severe illness that we are hanging on to hope that she'll be approved. We have a case manager with the insurance company, and she has already made notes in her chart about residential treatment being suggested, and why it's considered necessary at this point, and we hope that her advocacy will help us when we get to the point of actually seeking the approval. After that, there is actually still one more hurdle. They've accepted her based on the clinical data they've received, communication with her therapist, etc., but they have never seen her. When we have everything else in place, we have to take her to the facility (about four hours away), and have her evaluated there. They can still say, after seeing her, that their program isn't right for her. That would be devastating, as we have no other options in sight. Acute facilities can't keep her long enough to help, residential facilities don't want her, and long-term facilities are few and far between, and not a step we want to take right now anyway. Right now, all our hopes are on getting her into this facility.

Why residential?
So, all of that explains the process, but just what are we trying to do for her, anyway? I've had a few people ask me what we hope a residential stay will do for her. That's hard to answer. Our biggest hope is still that she will respond to medication. That really is the only way to manage schizophrenia. Before antipsychotics existed, schizophrenia was debilitating, and those afflicted with it lived in institutions. Antipsychotics are the really the only way to manage the psychotic symptoms, and even with those under control, most individuals can't live completely independently, thanks to the other associated symptoms. If we can't even control the psychosis, though, things get much worse. If you've been following us for long, you know that she's proven to be med resistant, and that we've already moved to using the one med they can use in some cases of med resistant schizophrenia. Even with recent increases, that is doing nothing for her. We're not hopeless yet, though. If we get the right doctors on our side, we can still increase her dose further. Her current psychiatrist won't, and at least one of the psychiatrists we saw in the hospital wouldn't. Some still will, though. It's tough, because this med is used so rarely, and almost never in people her age. However, we have to be aggressive in our treatment, because her illness is so aggressive. The longer a person is left in psychosis, the less chance there is of it ever responding to anything. We need to push this med as high as we can before we give up on it working. We realize, though, that at this point, it may not work. If we can't get the psychosis under control, then we have to teach her to live the best she can with her symptoms. The frequent and intensive therapy, and structured setting, of a residential treatment program is a starting point for that. I guess the answer is that we don't know for sure what we hope to accomplish. All we know is that everyone who has treated her believes that she is no longer okay to be only outpatient right now. We've been doing the exact same thing with no success for some time now, and all we can do is try something different and hope it helps.

How long?
The other question I get often is, "How long will she be away?" I wish I had more answers for everyone, but we really don't know. This is all brand new to us; while it will be her ninth hospitalization, it is the first of this type. The average length of stay at this facility is three to six months. It could be shorter, especially if our insurance company isn't cooperative, if they determine that she's not progressing there or isn't right for their program after all, etc. It also could be longer than that estimate, potentially up to a year. I really don't expect that, because I can't imagine our insurance company allowing it. They'll require the hospital to justify her continued need every seven days, and I can't see them approving it for too long. There's really no way to say, though. Everything about this is foreign to us. All I can say is that I hope she's home soon, but more than that, I want her to be well, and we'll do anything we can to strive for that end.

Gratitude:
I can't begin to express how thankful I am for all of the amazing people in our lives. Countless people have used their time and energy networking with everyone they know that might be able to help us. There have been so many instances of "my old college roommate/cousin/former colleague/church friend is in this field" and "I know someone who knows someone who I think might have some connections to something psych related." Hope's therapist and psychiatrist have both spent their own time and energy trying to find a way to help her. This time around, some really amazing friends took it on themselves to coordinate assistance for us, knowing that we're not ever going to ask for help from anyone. Friends set up a meal train, and we've had a few meals a week delivered to our home, freeing time and energy to focus on other things. Some really cool guys my husband knows decided to chip in and buy a new toy for him and little man, just to add some extra fun and levity to our home. A friend contacted our church (where we have only attended for six months or so, and therefore only know a handful of people, and have only spoken to the pastor and youth pastor about Hope), and the church put out an email to leaders of life groups. These groups have prayed for us, brought meals, offered to do things like yard work to help us out. Friends have offered to run errands, take the little guy for a while, etc. One beautiful friend, who was there right after I got a call from the hospital about the discharge we knew was too early, just cried as I told her. Is there anything more beautiful than that type of raw, honest emotion? Honestly, we've just been blown away by how many people have stepped up and offered to help shoulder our burden this time around. I'll admit that it has often caused me to feel uncomfortable. I love to pitch in and help others out, but I am really uncomfortable being on the other end of that. I'm doing my best to just feel the gratitude and dismiss the discomfort, though. The world is full of so many amazing people with beautiful hearts, and I am so incredibly thankful for each person who has willingly stepped into our chaos and offered to stand with us. My heart may be awfully battered right now, but it is also so, so full.

Prayers:
People ask how they can pray for us. First of all, every prayer is appreciated. Knowing how many are carrying our family in their hearts and pleading on our behalf is humbling. For those of you who like to pray specifically, we ask first of all for healing. We know that science doesn't have a cure for schizophrenia, but we know that God is bigger than all of that. We don't know what the plan is for Hope's life, or for ours, but we pray that if it is in His will, that he will bring healing. We ask for guidance. It's hard to know what to do in such unfamiliar territory, and Hope's case is so unique that we can't really even find professionals who know what to do. No one on her care team has ever treated someone like her, and our family has never navigated these waters, so we live in constant uncertainty of what to do next. We ask for peace. We are exhausted, and still so far from anything that looks like rest. We ask for patience. Answers come slowly, and sometimes not at all, and it is so hard to just wait, when all we want is to know how this is all going to play out. We ask for prayers for our sweet boy, "Isaac" as he is known on this public blog. I don't talk much about him here, as he's not as comfortable with sharing as Hope is, but he has again been struggling. This is a hard life we're living, and while he sometimes seems to take it all in stride, he has been hit with some very difficult periods as well. We're in a hard time now, and ask that you keep him in your prayers. Lastly, as always, pray for peace and comfort for Hope. I can't imagine living just twelve normal, healthy years, and then having your mind turn on you. I can't imagine learning that you have a very serious illness that significantly decreases your chances of ever being able to care for yourself or live a normal life. I can't imagine being essentially a bystander to your own life, as you watch everything around you and inside you change, and finding yourself unable to change it and too detached to even care most of the time. As hard as it is to be us, I can't imagine how it feels to be her.

Thank you all, once again, for being a part of our story. It's a crazy life, and I would understand if people ran from the chaos. Some have, but more often, people have willingly stepped into the chaos. I am still blown away every time someone (especially those we've just met or don't know well) asks how they can love us, serve us, help shoulder our burdens. As I said before, our hearts are very full. <3

I'll try to update again as soon as we know anything newsworthy. We hope that there will be progress on the residential front within the next week or so, and when there is, I'll be sure to fill you in on the details.